Saturday, February 04, 2017

The subject of resentment has come up quite a bit lately with friends as we talk about the world of having disabled children. My friend Christine talked to me about how another blogger she was reading seemed so ANGRY, so upset with her child and that it made it hard to read her. I think that's an easy trap to fall into. I also think that maybe the blogger is writing out her frustrations and sorrow so maybe that's how she keeps from spilling it out onto her child.
We've all read those stories, parent of special needs child commits murder, or murder/suicide, because they can't deal with it ONE MORE MOMENT. Sometimes it's not that simple.
I sat once years ago in a training session with about 40 other special needs parents where we were supposed to learn about waivers and other government help we could get for our children, or at least learn what help there was. A woman sitting a few seats away from me was asking questions about her son who was quadriplegic with many other health issues. I watched her go from hope to exasperation, to hopeless as the sea of forms and nebulous certainty of what the future held became clearer. She literally said the words, "No one will take my child when I die, no one will help me. At this point I guess when I think I'm close to dying I guess I'll have to kill us both."

Then she started crying.

I understood more about the future in those moments than I had ever conceived possible. What I realized was that you have to sometimes accept the lesser version of your dreams - sometimes it's requisite to your own sanity.

I'd be lying if sometimes I don't break down into tears at story time in the evenings, because I have 12 year olds who still delight at me reading Sandra Boynton books in silly voices. I break down because I wonder who will read these books to them when they are old men with grey hair and I'm long dead. Will they miss these books? Will they be someplace where they are loved? What is going to happen to my children?

The flip side of that is that I accept that I can't completely control what happens. I can make plans, I can try to make arrangements and sort things to the best of my ability. I can't let my soul be destroyed if they don't work out exactly as I want them to. There are a lot of moving pieces in this life, and they don't get nailed down very well when you're a special needs mom.

I get frustrated. I get annoyed when Miles is being a shit head because sometimes he is LEGITIMATELY being a shit head. I get annoyed when either of them is having an autism melt down. But I can't let that feeling of "everything is bad" that might exist in moments or even hours consume me. SOMETIMES they do. Sometimes I cry. Sometimes I text my best friend the details of the poop horror show that can be my life.

And then I get on with life.

I make a decision every day, as corny and pinteresty (that's totally a word now) as that might sound. I'm going to be happy. I'm going to pursue things that make me healthy, improve my life, and I'm going to try to be a better person and mom. I'm going to FAIL A LOT. But I'm also going to not fail on some things and that's good to.

That doesn't mean that what I'm writing here is a sugar coated more delicious version of the pain and anguish it is to have two children that aren't what you dreamed of. It just means that I've sorted out how to deal with it, and how I'm not going to let it ruin the one pass I get through this life. This works for me. It might not work for you.

As for me, I look back on photos like this and think man - if I survived that, I can do anything.